OK, half-joking here........
Perhaps we should have a forum that will let us visit and just COMPLAIN, CRY, MOAN, BITCH and WHINE....... since our families and friends are about tired of hearing it all. Sometimes just the crying and moaning is theraputic, but making our friends listine to it is not, at least for them. (Ever wonder why you had more friends before you were daignosed with KC? ) This could be the digital age version of the WAILING WALL.......we could just drop off our concerns and wishes and complaints, whether nor not anyone else ever read them.
heh heh heh just a suggestion.
Just a few more days till St. Patrick's season!!
Hire a piper.
cheers, Piper
A New Forum Needed?
Moderators: Anne Klepacz, John Smith, Sweet
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Andrew MacLean
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It may be only a couple of weeks to St Patrick (who was born just across the Clyde from where I now sit), but it is months to St Andrew. 
(November 30).
Patrick was born in a village he called Banum Tavernium. This sat in what we now call the Kilpatrick Hills (Kilpatrick means birth place of Patrick). This area was gathered by Alpin into the first unified Scotland in the ninth century. Alpin's son, Kenneth, was for King of the unted people of Scotland (or High King of Scots).
Andrew
(November 30).
Patrick was born in a village he called Banum Tavernium. This sat in what we now call the Kilpatrick Hills (Kilpatrick means birth place of Patrick). This area was gathered by Alpin into the first unified Scotland in the ninth century. Alpin's son, Kenneth, was for King of the unted people of Scotland (or High King of Scots).
Andrew
Andrew MacLean
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kerrie phillips
- Regular contributor
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- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: east anglia
Half joke or not, not a bad idea.
I came home from college yesterday and could have whailed, except my husband would have probebly told me to shut it!!
i felt so headachey and tired it was awful.
I felt like just giving up all hope.
been trying to have something sorted since august and nothing works. SOFT lenses did not do it . those ones that were blue and hard in the middle soft on the outer did not do it. AND rgp's definately did not do it.
So i am back to glasses for the time being.Contact lens man said all options were exhausted, cornea man said he did not want to do surgery yet. and they dont even do certain KC surgeries at my hospital anyway.
I f i could afford it i would go somewhere for a second opinion, having said that i cant drive as i cant even read a no plate to do my test!
I often wonder what my prospects are going to be to get a nursing post when i qualify if i cant drive, Because i will not be able to start at seven like most places do.
I guess i am just on a off period but i really wondre if three years of training and driving lessons is going to be worth if theres nothing at the end.
SORRY FOR THE WHAILING !!
I came home from college yesterday and could have whailed, except my husband would have probebly told me to shut it!!
i felt so headachey and tired it was awful.
I felt like just giving up all hope.
been trying to have something sorted since august and nothing works. SOFT lenses did not do it . those ones that were blue and hard in the middle soft on the outer did not do it. AND rgp's definately did not do it.
So i am back to glasses for the time being.Contact lens man said all options were exhausted, cornea man said he did not want to do surgery yet. and they dont even do certain KC surgeries at my hospital anyway.
I f i could afford it i would go somewhere for a second opinion, having said that i cant drive as i cant even read a no plate to do my test!
I often wonder what my prospects are going to be to get a nursing post when i qualify if i cant drive, Because i will not be able to start at seven like most places do.
I guess i am just on a off period but i really wondre if three years of training and driving lessons is going to be worth if theres nothing at the end.
SORRY FOR THE WHAILING !!
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Andrew MacLean
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Kerrie, thanks for sharing. There are days like that, to be sure. As for your training.......just keep at it and hope that your KC can be corrected. Sounds like you need a new optham. So, moan all you wish, IN THIS THREAD, and we'll discuss facts, treatment, options, meds and all the rest in the other threads.
You didn't mention what hubby had prepared for your dinner when you got home. Wait......he hadn't made dinner? You were in class all day, and then had to come home and cook? That's worse than the KC!!!
piper
You didn't mention what hubby had prepared for your dinner when you got home. Wait......he hadn't made dinner? You were in class all day, and then had to come home and cook? That's worse than the KC!!!
piper
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kerrie phillips
- Regular contributor
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- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: east anglia
How could you guess yes i had to cook and wash up and then took out all my aggression at body combat class. (i don't think he knows how to cook)
As for sclerals they have nt even been mensioned the hospital contact lens specialist said there were no more options, would that be something to do with the astigmatisms or shape of my eyes or level of distortion or because he knows no better.
I have just got back and feel really bad again i could not see anything today and was near the front. everybody commented on how sore my eyes looked.
Spoke to the lens speacialist and he wants to go back to the soft lenses, as they were the most comfortable, yet i read they will never give the vision needed because they mould around the eyes instead of supporting or pushing into shape, the cornea.
i just do not know what to do other then scream shout cry and bash my head against a wall.
As for sclerals they have nt even been mensioned the hospital contact lens specialist said there were no more options, would that be something to do with the astigmatisms or shape of my eyes or level of distortion or because he knows no better.
I have just got back and feel really bad again i could not see anything today and was near the front. everybody commented on how sore my eyes looked.
Spoke to the lens speacialist and he wants to go back to the soft lenses, as they were the most comfortable, yet i read they will never give the vision needed because they mould around the eyes instead of supporting or pushing into shape, the cornea.
i just do not know what to do other then scream shout cry and bash my head against a wall.
OK.......all of us have screamed and cried....I stop short of the head bashing part.
Sclerals saved me and let me see for a long time before my corneas became like the ends of american footballs.
The sclerals float on the fluid, and the fluid becomes a part of the "focusing" lens......if they are fit to reshape or mould the eye then REAL PAIN is the end result. A three-point fit is the objective......the lightest touch of the lens in the very center, and at both edges......and the space in between is filled with tears, real or drops. You should not be in pain.
Remind me not to meet you in a dark alley......a'm not much of a fighter any more.
Teach your other half how to cook.
Piper
Sclerals saved me and let me see for a long time before my corneas became like the ends of american footballs.
The sclerals float on the fluid, and the fluid becomes a part of the "focusing" lens......if they are fit to reshape or mould the eye then REAL PAIN is the end result. A three-point fit is the objective......the lightest touch of the lens in the very center, and at both edges......and the space in between is filled with tears, real or drops. You should not be in pain.
Remind me not to meet you in a dark alley......a'm not much of a fighter any more.
Teach your other half how to cook.
Piper
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Pat A
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- Location: Herts
Kerrie
If I understand the position correctly you are now entitled under the NHS to choose the hospital you wish to be seen at. And you are entitled to a second opinion, which in your case would seem to be entirely reasonable as it sounds like your hospital do not have the facility to give you the specialist help you need. (No doubt someone will correct me if I'm wrong....)
Have a word with your GP and see if you can get an urgent referral to Moorfields. I know it's a long way for you, but the train from where you live will take you into Liverpool St and it's only 10mins walk from the station (or £6 well spent if it's raining in a Taxi!) to Moorfields.
Hope that helps - but in the meantime, keep trying to teach him to cook!
If I understand the position correctly you are now entitled under the NHS to choose the hospital you wish to be seen at. And you are entitled to a second opinion, which in your case would seem to be entirely reasonable as it sounds like your hospital do not have the facility to give you the specialist help you need. (No doubt someone will correct me if I'm wrong....)
Have a word with your GP and see if you can get an urgent referral to Moorfields. I know it's a long way for you, but the train from where you live will take you into Liverpool St and it's only 10mins walk from the station (or £6 well spent if it's raining in a Taxi!) to Moorfields.
Hope that helps - but in the meantime, keep trying to teach him to cook!
Pat
We do not stop playing because we grow old;
We grow old because we stop playing.
We do not stop playing because we grow old;
We grow old because we stop playing.
Kerrie, survival is first, fashion is second.......either get yourself a pinhole viewer like the opthams have, or make a pair of glasses with a paper lens having a slit or hole (pinhole) which will allow you to see better, then sit in front where other studens cannot see or comment on them. Do whatever it takes to suceed and prosper.
look at a clock with hands, watch the second hand go around. Depending on your astigmatizm, there iwll be one place where the second hand is clearest. That is the angle at which you put the slit in your new (non-fashion_ view glasses. For instance, my best sight is where the lines run between the 8 and the 2 on a clock face. Regular vertical lines are the worst.
Here's an idea: make a pair of glasses with cylindrical lenses, and slits built in.....occasionally reach upand rotate each lens and hum to yourself as you do this......almost guaranteed to get you your own seat even on a crowded bus!!
piper
look at a clock with hands, watch the second hand go around. Depending on your astigmatizm, there iwll be one place where the second hand is clearest. That is the angle at which you put the slit in your new (non-fashion_ view glasses. For instance, my best sight is where the lines run between the 8 and the 2 on a clock face. Regular vertical lines are the worst.
Here's an idea: make a pair of glasses with cylindrical lenses, and slits built in.....occasionally reach upand rotate each lens and hum to yourself as you do this......almost guaranteed to get you your own seat even on a crowded bus!!
piper
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GarethB
- Ambassador
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In England certainly you can choose upto four hospitals to be referred to but how do you know which to go to?
That is where this site comes in.
In my experience Kerrie, if a particular lens option is not mentioned, it is because they do not have the expereince or facilities to try it. You can ask your GP if they can refer you to a hospital that might be able to help. Otherwise search this site for Lynn White and pm her, she lives in Great Yarmouth so would probably know of a hospital or an optom that could give a second opinion and one that may have expereince of Scleral lenses.
That is where this site comes in.
In my experience Kerrie, if a particular lens option is not mentioned, it is because they do not have the expereince or facilities to try it. You can ask your GP if they can refer you to a hospital that might be able to help. Otherwise search this site for Lynn White and pm her, she lives in Great Yarmouth so would probably know of a hospital or an optom that could give a second opinion and one that may have expereince of Scleral lenses.
Gareth
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